Retrospect on the Pediatric Proton Foundation's First Year!

Dear Readers,

I would like to wish everyone that follows this blog a very Merry Christmas! We have been blessed this year with Jacob's continuing good scans and stability regarding his back issues. We have also been successful in gaining our public charity status and followed with a news release debut viewed by over 75,000 people.

Indeed, the Pediatric Proton Foundation has made great strides this year. We were at two national conferences. We have made many important connections in the pediatric oncology world. We have also posted opinions when proton articles have run and been featured on t.v. and radio. Our most recent airing on www.whatmatters.tv. Check us out!

Our board of directors represent some of the best talent in the pediatric radiation oncology world and will be key players in grant decision making. Thank you so much to Dr. Keole, Dr. Keppel, Dr. Porsche, Dr. Indelicato and Dr. Chang! You are truly the best!

Not bad for a first year of operation, but we still need your help! We are seeking skilled volunteers and always financial supporters that believe in what we are trying to do to help other parents and their kids. We have been there done that and support is critical to our success.

Our 2010 goal is to continue to raise money to offer financial grants to pediatric cancer patients to receive proton therapy. If you feel it in your heart and have a charitable giving plan, won't you please consider the Pediatric Proton Foundation? You can donate online at www.pediatricprotonfoundation.org.

Again, Happy Holidays!

Susan Ralston
Executive Director/Founder
Pediatric Proton Foundation

Little Jacob Big Hit in Windy City

We just got back from our first time exhibiting at ASTRO in Chicago last week. The number of attendees were almost 11,000 people from all over the world. Jacob and I spoke a few times at the IBA booth and then later at the IBA proton symposium. Hopefully, we helped put a face on the pediatric cancer issue and the advantages of proton treatment for pediatrics. Jacob said our motto very clearly each time, "Proton: because the smallest things matter most." Jacob sang his Hippo song and received a round of applause. He later gave an encore of "take me out to the ballgame" in honor of Harry Karry and the Chicago Cubs. More applause. A star is born!

The Pediatric Proton Foundation had its 1st Annual Meeting while in Chicago. The Board of Directors had a lively discussion on how we can make the most and best impact with the foundation. We especially believe we need to target pediatric oncologists. Several other great ideas were developed that will help grow the foundation. I am thankful to have such a professional and dedicated board.

You will notice a new gadget on our blog, called GoodSearch and GoodShop. This search engine is powered by Yahoo. If you load this toolbar, then each time you do a search on the internet, the foundation will earn a cent. If you shop through GoodShop, each vendor offers various donations based on your total purchase. This is a great way to give without ever writing a check. Just do your normal searches and watch the pennies turn into dollars. Pass the word to your family and friends, we appreciate any and all support!

PPF to hit the Windy City - Chicago Here We Come

The Pediatric Proton Foundation and 5 volunteers from age 4 to 80 will be attending the annual meeting of ASTRO (American Society of Theraputic Radiation Oncologist) in Chicago starting this Saturday, October 31st through the following Wednesday, November 4th. We are excited to have a chance to interact with the professional radiation oncology community and other vendors and professionals that work with proton therapy.

Our 4-year old son, Jacob, will also be in attendance during exhibit hall hours. He sings, he dances and he is a TWO YEAR Cancer Survivor in part due to the proton therapy he received as part of his protocol to beat Ewing's Sarcoma. Since Jacob's tumor was found on his thoratic spine, it was critical that we found a treatment that wouldn't harm his other growing organs and bones. We can't wait for others to meet him and see how grateful we are for having our son here and enjoying his life to the fullest.

We will also have our first annual meeting of the PPF while in Chicago. It will be the first time our board members will meet face to face so we are excited for the event.

Check out our newly revised website. We have enhanced it to include bigger buttons and easier navigation. Our website is www.pediatricprotonfoundation.org.

Senator Kennedy and Proton Treatment

Pediatric Proton Foundation Responds to NPR Commentary on Senator Kennedy’s Proton Therapy Treatment (September 1, 2009)

I am miffed that once again proton treatment is in the news and being cast in a negative light along with Senator’s Kennedy’s death. Somehow naysayers have twisted a story saying Senator Kennedy’s proton treatment for his brain cancer was unwarranted and experimental. If you were a legendary Senator and bore the name Kennedy, would you not seek out the best treatment available to try to treat your deadly cancer? Of course you would and that is what the late Senator Kennedy did. Senator Kennedy was known for his compelling stance on healthcare issues. Of course, first he selected one of the top neurosurgeons at Duke then he selected the best radiation treatment available in the U.S.: proton treatment.

The physicians at Harvard are considered top experts in their field and are recognized around the world for their superior cancer programs. His doctor team determined together with their patient, Senator Kennedy, to treat his cancer with protons as they considered it the best medical option they could provide under the Senator's severe circumstances. From what has been reported, Senator Kennedy's tumor was among the most aggressive and fatal types of cancer. For him to have survived 15 months from diagnosis and remain a vibrant participant in his work is actually quite remarkable. Most glioma patients at Senator Kennedy’s age (76) are lucky to live another 6-12 months. There is no doubt that proton therapy achieved the goals of his physicians: minimal side effects during and after treatment and more quality days for him and his family.

The same choice is needed for all cancer patients – not just the affluent and easily recognized. The same choice is needed for all pediatric cancers. Harvard has released many new studies that show the chance for secondary cancer is reduced up to 50% when protons are used on children versus traditional radiation. Children are still growing. They are highly susceptible to deficit late effects from radiation hitting non-tumor healthy tissue especially in the brain. The dose to healthy tissue is minimized with protons. Senator Kennedy knew this information and that’s why he got it. Now let’s help our kids get it too.

Susan Ralston
Executive Director& Founder
Pediatric Proton Foundation
www.pediatricprotonfoundation.org

Protons and Children: September is Childhood Cancer Awareness Month

I was talking to a friend of mine and we were discussing how many children have actually received proton treatment as part of their protocol in the United States. I suggested to her that there were around 1,000 pediatric patients treated here. She said last year? I said no, I mean since it started in 1990!!! You have many, many of the experts saying it is undisputable that protons should be used versus photons with children because of secondary tumors, and because of the deficit effects of radiation on healthy tissues in children. Yet how can it be there have only been 1,000 kids treated in the last twenty years??? This is why I started the Pediatric Proton Foundation.

Here is how I come to my estimate:

It seems it is agreed Boston, by far, treats the most pediatric patients. They published they had treated 320 pediatric cancer patients from a total of 3,515 or 9.1% of patients. Let's assume then the other centers treat approximately half that or 4.5%.

Boston = 320 peds self reported
LL 13,500 = 607 peds
Florida 998 = 44 peds
Indiana 632 = 28 peds
MDA 1000= 45 peds

That equals a grand total of 1044 peds. This has to change. I am going to try to help make it change with your help.

September is childhood cancer awareness month. The following video is a tribute to our young warriors.

September is Childhood Cancer Awareness Month - Time to Demand Protons!

September is childhood cancer awareness month and I found this video that captures the emotion of being a Mom with a cancer child.

www.youtube.com/watch?v=TEg1a8plJq4

Procure's Oklahoma City Proton Center Open for Business

I attended the grand opening of the Oklahoma City Proton Center on July 8th! Dr. John Cameron had a vision of treating patients needing proton in centers outside of academia settings, and his dream came true this day. Procure's first center is most impressive. There are 2 more in some stage of development with Procure including Chicago and Boca Raton.

I noted subtle upgrades throughout the tour starting with a concierge that is postioned in the center to help patients and their families make all their arrangements from lodging to fun. I have visited 3 other centers so I have some frame of reference. It's great seeing everything brand spanking new. Incorporated throughout the center are the latest in positioning robotics, and a slew of very keen upgrades such as an enclosed floor in the rotating gantry room. They also plan to install a pediatric couch in the gantry so children can be positioned more comfortably for their treatment. I also spoke to a physicists that is developing a new application for anesthesia for children that will speed the treatment process up considerably making them the same if not faster than an adult patient to be treated.

What I believe will make OKC work is the new Integris comprehensive center being built a stone through away from the proton center. Patients will be able to walk to the cancer center for routine blood counts, tests, and any other treatment (ex. chemotherapy) that goes along with proton treatment. This in itself may make it more "convenient" that some other center's setups which usually include a ride to get to the nearest cancer center. The fact it will be designated a "comprehensive" cancer care center by the NIH, will make it one of the 25 or so designated centers in the country.

Cheers to Procure, IBA and Integris for what appeared to me to be a job well done!

Pro Proton!

When I was writing the press release announcing the pediatric proton foundation, one thing I tried to explain was the finding out about proton treatment gave us hope at a time that we desperately needed it. I don’t know how to describe finding out my son had cancer. At first, I was in denial though I knew the doctors didn’t have time to wait for me to get to acceptance. Everything from the moment we heard tumor went like lightening. You see my son was paralyzed. There was cancer and there was a tumor pressing on his spinal cord. We agreed to do emergency surgery. In this time and shortly after my son’s initial diagnosis, my father-in-law suggested we look at proton. He called Boston and Jacksonville and both places supported Jacob being considered as a patient. I believe my father-in-law being a chemical engineer understood the terrible toxicity of chemo drugs and the harm it would do to my son’s young body. We heard from the doctor’s themselves that there are no new chemo drugs and the ones that would be used on Jacob were 30 to 40 years old. They cause temporary and permanent damage to the healthy tissues along with the cancer tissue. The only changes that have been made to protocols are how much gets used in what combination and how often. That’s it.

I remember being angry that this was all the choice we had. I began searching online every waking hour in regards to ewing’s sarcoma, the drugs Jacob would be on, the protocol, the clinical trials. Many hours and hours. Slowly, I began to include proton treatment in my research once I understood radiation is part of the cure. My sister-in-law, a nurse, also supplied us with information on proton. Suddenly, I thought my son CAN beat this thing. Doom and gloom turned to hope. He had to be given the best chance of killing the cancer and still leading a normal life. We knew the chemo was bad, but did the radiation phase have to be archaic too? Did we have to watch our son’s back be zapped by 40 year old radiation machines and destroy his little infrastructure? NO, we didn’t.

We fought hard and worked day and night and got our son accepted to MD Anderson’s proton therapy center. This is why we are here today as the Pediatric Proton Foundation. We believe every child deserves to have proton as their radiation therapy when fighting cancer. These children fighting cancer already have the cards stacked against them in so many ways. I understand why proton is often called the “beam of hope”. When life seems bleak and your child faces a possible death sentence, proton is just the bright spot of hope you need, for survival of cancer and survival of the late effects of the treatment itself.

We are “Pro Proton!”

Proton for Pediatric Cancer Tumors - Pass it on!

It’s remarkable that so few people know about protons. I frequently bring up this subject when I am talking about my son’s recovery from ewing’s sarcoma cancer and most people say, “what is proton?” I start with an easy, “a targeted form of radiation, more bullet-like and precise than traditional radiation.” I go on to explain my son was only 2 when he was diagnosed and had a lot of growing parts that we didn’t particularly want touched with radiation like his heart and his lungs. Most people get that. Targeted sounds good, but why radiation at all?

Most people don’t understand that over half of people diagnosed with cancer will be prescribed radiation as part of their protocol to get better and that includes children. Chemotherapy is not a targeted or precise method in destroying cancer, in that you have to destroy many good cells when going after the bad cancer cells. This is the reason fast growing healthy cells such as hair, and mouth cells die along with the bad. Same holds true with radiation, in that a beam is directed at the cancer tumor site and the radiation hopefully destroys the cancerous cells and the cells surrounding the tumor bed. We want to destroy the bad cells without destroying the good and healthy ones beyond the cancerous tumor bed. Proton accomplished this because of the Bragg peak. The Bragg peak describes how the energy enters the body and deposits the radiation in the tumor target but not much beyond. It really is that simple. Proton works better because of the Bragg peak.

Proton gets given to pediatric cases because family and friends educate themselves and pass it onto loved ones, friends, and those fighting the beast that is taking our children with it. PROTON FOR PEDIATRIC CANCER - PASS IT ON!

New Centers in 2009

Soon we will have 7 proton centers operating in the U.S.! The more the merrier if you ask me.

Procure's Oklahoma City Proton Center will open July 8, 2009 and is already accepting inquiries and beginning to schedule patients for consultations. This center can be reached by calling 888-847-2640. Some pediatric patients may be able to be treated there depending on if they need anesthesia. You can check out this new center by going to http://www.procure.com/. They have a nice newly designed website with tons of information available.

The other new center will be opening in November 2009 in Philadelphia - the Roberts Proton Therapy Center. This center can be reached by calling 1-800-789-PENN(7366). You can visit this center on the web at http://www.pennhealth.com/. They are planning to have a gantry room dedicated to pediatrics so this makes me very happy.

I was reading some of the very latest information available on protons versus photons, and it is indisputable regarding the superiority of protons in use for children. Children are still developing and having radiation hit healthy tissue can cause devastating effects. Especially when a child has a brain tumor. The brain is very sensitive to radiation. Doses as low as 18 gy can cause developmental delays, hearing problems, loss of iq (this happens every year after radiation for many years to come) and many other terrible problems. I heard a very reknowned radiation oncologist for St. Judes discuss this subject and it made me get goose bumps hearing the devasting effects of radiation to the brain. He touted the scientific evidence as showing protons vastly superior over photons or IMRT especially with brain tumors. I asked him why doesn't St. Judes have proton then? He said I would have to ask the powers that be. I plan too. Many parents flock to St. Judes because they are the only pediatric hospital dedicated to solely to pediatric cancer. Of course, I understand children can be referred to the other centers, but still.

I may be like a caped crusader here. Just an empowered Mom that feels her son's life was saved with protons. I am making it my job to make these facts known. I hope someday to get the attention of the media. My goal is to make sure in my lifetime that all of our cancer kids that need radiation treatment can get to the protons. Having more centers will ensure more slots are available for the children that truly have the most to gain from proton treatment. Join me in this effort - will you? Check out our website: www.pediatricprotonfoundation.org.

Website Growth and More!

You will notice we have a new look. I found out the "beam of hope" was used by the NAPT and Loma Linda and many, many others and I really want to develop our own identity so we will now use our motto, "proton - because the smallest things matter most."

This has been an active week for the foundation. We have been contacted by two new proton centers one in Oklahoma that will be opening their fixed beam gantry room this July, and also Procure's Chicago center. We are in the process of redesigning some of our materials and plan to do a mass mailing to all the centers which will include our materials and also heart shaped cookies just to make sure the word gets out about our foundation.

I also had a chance to talk with Len Artz the head of the National Association for Proton Therapy and it turns out he has family here in Virginia Beach so we plan to meet face to face in a few weeks when he is visiting. Len explained to me what his organization does and it really is the voice of proton therapy as each center is a member of his organization. He is a wealth of knowledge regarding the history of each center, the business model and insurance issues.

We also started some search engine optimization strategies and the foundation's website has experienced increased activity each and every day since its launch the beginning of May. We have had visits from 17 countries! We also started to receive donations and we are very appreciative. Every dollar will be put right into making the goals of the foundation a reality. Every child that gets proton versus photon may enjoy a lifetime free from radiation damage to healthy tissue that surrounded their cancer site. We stand ready to assist any family trying to navigate through the myriad choices and issues when pursuing proton treatment for their child.

Test

Let the Blogging about Proton Begin!

My goal is to update this blog at least once a week. Not that I think I have some “in” to pediatric proton, but like everything else, when you focus you notice. One of the things that jumps out to me, is that proton versus photon in terms of killing cancer is running just about equal in studies published to date. The issue, not discussed often, is the after effects. Radiation at certain levels kills cells. This is the desired outcome: cell death. But when healthy cells surround cancer cells, you have to ask where does the radiation path start and stop? Please take notice of these differences. I spoke recently to a top physicist in regards to proton radiation, and he said, “This type of treatment should be standard of care for all cases of radiation to people in their mid-40’s….why destroy healthy tissue unnecessarily?” I got it. But why is it that this is such an uphill battle? Lack of published studies is one good reason and the cost another. But I digress.

I read a blog recently about the swine flu and the enormous outreach for this problem. Comparing it to children’s cancer, we, the parents of a child cancer patient, can’t understand why there isn’t the same outrage for children’s cancer. It is horrific to watch a child go through cancer treatment. I can honestly say in my life I have never used the word "horrific" until my baby got cancer.

I wanted to end this post by pointing out all the new centers that are coming up over the next 3 years. We go from 5 proton centers now to 11 centers by 2012 see: http://www.pediatricprotonfoundation.org/proton_treatment/u.s._proton_centers/
Lots of people obviously believe in it, and are willing to put their money where their mouth is. Thank you! And now I will follow and post about the dedication each will have to pediatrics. I know Philadelphia is making a dedicated room just for pediatrics, and Oklahoma is pushing to start pediatrics as soon as January 2010! Wahoo!

Stay tuned! Check us out @ www.pediatricprotonfoundation.org. We have loaded some new success stories of children that made it to proton. Check them out at http://www.pediatricprotonfoundation.org/proton_treatment/children_success_stories/

Thanks for following us!

Pediatric Proton Foundation Officially Launches!

Yes, we are a few months later than we planned, but we are here. I am posting a copy of our first press release here.

VIRGINIA BEACH, VA. In 2007, Susan and Jim Ralston received the news every parent dreads: their 2-year-old son was diagnosed with spinal Ewing's sarcoma, a rare and aggressive cancer. This heart-breaking report was followed by a discovery from relatives that offered some comfort and hope: a relatively new radiation treatment, proton beam therapy. The Ralstons began a quest for more information and learned proton therapy could help their son improve his odds of beating cancer.

As a result of this first-hand experience and months of research, the Ralstons are launching the Pediatric Proton Foundation. Their mission in founding the Pediatric Proton Foundation is a simple one: to provide education, advocacy, and assistance to families in need of pediatric proton. Said founder Susan Ralston, “I am proud that we will be able to help other families and their children with cancer gain access to proton treatment across the country.” The first phase of the Foundation’s rollout plan includes a parent-friendly website loaded with everything a parent needs to help determine if proton is an appropriate treatment for their child and then how to quickly get to it. The next phase involves working to raise money to help researchers with pediatric proton studies and also to help families with the huge financial burden that comes with traveling to get proton beam treatment.

There are currently 5 proton centers operating in the United States with 5 others in some stage of development. Hampton University, near Virginia Beach, Virginia is developing a proton center expected to open in August 2010. “Proton beam treatment delivers targeted radiation to the cancerous site and avoids surrounding healthy tissue. This is critically important when treating children with cancer, since they are growing and many tissues are still developing” said Ralston. There are an estimated 13,000 children diagnosed annually in the United States with cancer and half of those cases are some type of bone, soft tissue or organ cancer, which means many of these cases could potentially be treated with proton therapy. “Dealing with cancer is one nightmare, and then dealing with the after effects of the actual cancer treatment is yet another nightmare. Anything we can do to improve cancer survival rates and reduce the after effects from the treatment needs to be pursued. These are America’s children – they deserve the best we have to offer here,” continued Ralston.

In mid-April, the Foundation was a first-time exhibitor at the “Pediatric Neuro-oncology in the Proton Era” meeting that was sponsored by Massachusetts General Hospital - the site with the world's greatest cumulative experience with pediatric proton neuro-oncology. The Foundation will be an exhibitor at the 51st Annual ASTRO (American Society for Radiation Oncology) meeting at McCormick Place West in Chicago November 1-5, 2009 with over 12,000 attendees expected from all over the world. “We hope that through our active involvement in the pediatric oncology world, we can bring more attention to this treatment option for children and therefore, more supporters to our cause of helping appropriate pediatric cancer cases access proton therapy,” said Ralston.

About the Foundation:

The Pediatric Proton Foundation is uniquely positioned as an independent, nonprofit charity that relies on voluntary funding from a variety of sources to be able to provide the most objective information available about pediatric cancer treatment at each proton center in the U.S. The dollars given are used to help support our mission of providing education, advocacy and assistance to families in need of pediatric proton. We are a non-profit 501(c)(3) charitable organization. You may be able to deduct some or the entire amount of your donation for tax purposes. Please consult your professional tax advisor.

For more information, visit the Pediatric Proton Foundation’s website at: www.pediatricprotonfoundation.org.

Foundation website coming soon

After months of laying the groundwork, the Pediatric Proton Foundation was formally approved as a corporation on December 30, 2008. There is still much work to do to get the website ready for launch. We are planning to launch the site in February. The website name will be www.pediatricprotonfoundation.org. Check back soon for the latest!